Saturday, 7 April 2007

Things I forgot to say

Meant to be at a wedding today but can't go due to illness. Not me! Elspeth unfortunately has a very bad throat infection and practically lost her voice and I'm heading for it so no wedding.

Talking with Maureen my research link nurse prompted me to recall a number of things that have happened that I should really let you know about.

In the bigger picture, the trial requires that - assuming I get clinical benefit from the Lenalidomide- I should have no less than six cycles and can go on if necessary until February 2008. This sound like hard work on its own but in my case its a real test because in all the treatments I have had I have never made it past the 5th cycle. My first treatment was the C-Vadd but at the beginning of Cycle 5 I had a pretty serious pulmonary embolism which could have carried me away but didn't. The C-Vadd was stopped and I went on to autologous stem cell transplant after a recovery period; I then had Thalidomide and Dex and this was stopped I think just on cycle 4 or 5 because I had I think three blood clots and given the clot risk of thalidomide the risk was maybe getting too high; I then had Velcade and Dex ( Dex appears prominently in this story!) but that was stopped early as well as was pretty ill on it ( which was when I was diagnosed diabetic and we'll never know what it was that was making me ill) but the slow reduction of my paraprotein was enough for Huw my consultant to say halt; then I had Z-Dex which was again stopped after the lack of clinical benefit at about cycle 4 or 5 . So the jury is well out on whether I'll make the 6 cycles on the Lenalidomide study and hopefully get some benefit. The irony for me was that I sailed through my transplant ( not underestimating how difficult it was and that I managed to pick up ecoli septicaemia)- but was home within 14 days- a good result. But I do think as I've said before- my treatment costs must be nearing the figure of the GDP of a small country.

In terms of the wee picture and the trial- I forgot to tell you that I've had a few things to relay to Maureen and Brenda the Doctor at haematology-

bad heartburn/reflux the first few days on lenalidomide- which I rarely suffer from and so given omeprazole to counter that.

Sore mouth and ulcer which I'd expect but able to address with the trusty chlorhexidrine ( my favourite the red one)mouthwash which I'm well familiar with now

Couple of bad ( I did say I'd speak openly) bouts of diarhoea which we don't know if drug related ( it can be one of the side effects) or a bug so we'll monitor during cycle two

Very slight neuropathy in my left hand- again the left side of my body where all my other main issues are. Nothing serious but enough to keep on record for the trial. I had this on the thalidomide and the Velcade as well as I recall.
Right - off to build something.

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